New Member Introduction 😉

[Trena]

What a wonderful support group! My name is Trena, I live in Phoenix Arizona, I am a single mother with 2 kids and I was newly diagnosed in March 2015 (at the age of 41) with Wegener's Disease. I was struggling with sinus issues for a month and a half and I had just thought that I had terrible allergy issues. I was given 3 different prescriptions from my primary doctor and 2 from my ENT and still no relief. It wasn't till my left foot and left had awful tingles and a shooting pain one evening that I knew I had to go immediately to the hospital. The doctors were wonderful and after a week of many test a lung biopsy confirmed that I had Wegener's Disease with growths in my lungs, kidney damage, sinus issues, hearing loss and neuropathy. I started my Chemotherapy on April 1st in a pill form that I took daily at home. Due the my lowered immune system I unfortunately was admitted to ICU July 5th with PCP Pneumonia. After a kidney biopsy the doctors informed me that I was now in remission and I had no active Wegener's issues (the growths in my lungs were gone and I do have some kidney damage, yet nothing too bad). I was pleasantly surprised since I was where the doctors wanted me to be after 3 months of chemo vs 6 months of chemo. Due to an issue with medication not agreeing with me I was admitted back into ICU for a week at the end of July which was caught early. I was on oxygen full time due to the pneumonia for a few months and now I only need oxygen in the evenings while I sleep for about 3 more months.

This has been quite an amazing journey for my family and I. I was blessed with amazingly supportive parents to help out with my 8 year old son and 10 year old daughter. My kids are my strength and I discussed every part of this journey with them so that they were not scared (ex: chemo is a medication to help mommy get better and not a scary word). My kids would visit me in the hospital and have to wear a gown, mask and gloves, yet we were all together snuggling in my bed on the journey together. I am also extremely blessed with amazing doctors which work well as a team. I go in for weekly blood tests near my home, the results are sent to all my doctors the next day and they contact me if there is a problem (which happened this past July when I was instructed to go to ICU immediately). I see my doctors every month and I am just now starting to embrace my new "normal" life and the issues I need to be aware of. I did lost most all my hair due to the chemo, yet it has already started to grow back and I'm just thankful....thankful to be here today with my kids! I also had a autoimmune disease 21 years ago (ITP where I had a month of chemo and eventually my spleen removed). Just like Wegener's, the doctors don't know how I got ITP.

I look forward to talking with several of you and continually learning more our this disease and the journey ahead that we all deal with. I can't wait to read through all these threads and soak in all the information I can get!

[annekat]

Hi, Trena, and welcome to the forum! I'm guessing you were or are on CTX (Cytoxan, Cyclophosphamide) as initial treatment and probably some prednisone, too. It's troubling that you've gotten pneumonia while you are being treated, and I'm wondering if you are on Bactrim, an antibiotic many of us take 3X per week which protects against certain opportunistic forms of pneumonia. Can't say that it is an absolute preventative for all pneumonia, though. What was the med that gave you problems and landed you in the ICU? Despite your problems and hospital stays, you have done very well to have been declared in remission from WG after only 3 months of treatment. Are you on any maintenance meds, and some prednisone, too, to keep you in remission? Others will have lots to say, I'm glad you found us, and it's so true that reading through all the posts and threads here, past and present, will go a long ways toward giving you an understanding of all this. I look forward to your updates. There are a couple others on here I know of in the Phoenix area and no doubt you will discover each other!

[Pete]

Welcome to the "club", Treena!!

I'll echo Anne's greeting and the question about bactrim. You're fortunate to be close to a Mayo Clinic in Phoenix. They have knowledgeable wegs doc's there. Hope you get to a sustainable remission soon. Good luck!!

[Jaha]

Hi Trena,
I'm glad that you found this forum and that you are doing so well. You will never feel alone in your journey, with all the great members that we have here. There is always somebody to talk to and answer any questions you might have 24/7. Wishing you all the best.

[Trena]

Thank you Jaha! I agree and I love that this is available 24/7. This is a journey that so many of us are on and it's wonderful to have such great support!

[Birdie]

I live in Phoenix Arizona

Trena,

Sounds like you're doing incredibly well for just a few months after diagnosis. Don't get complacent, stay on top of if forever because Wegeners will jump back up when you're not looking.

I think you joining makes three of us on this forum from Phoenix.

Gary

[annekat]

I'm thinking there was a fourth from Phoenix but she didn't really stay in touch for long.... I could be wrong, though Don might know. Anyway, Gary and Don are both great forum members!

[drz]

Welcome again. Were you on Bactrim or some thing to try prevent PCP. That is a known risk when taking drugs to knock down or try control the Wegs. I get monthly pentamadine nebulizer treatment since I am allergic to sulfa and can't take Bactrim.

Glad to hear you are doing well with your treatment.

[Trena]

Hi Gary! It great to meet others that are in the Phoenix area! I have been treated at St. Joseph's hospital downtown and they have all been AMAZING there! The doctors have been incredible and so supportive. I have been at such peace during all of this because everyone has been so wonderful to my family and I.

If if you don't mind me asking how long have you had Wegener's?

[Pete]

Hey Trena,

Sulfameth(oxazole)/Trimethoprim is another name for bactrim (at least that what my bottle of it says). You were taking the double strength dosage 3x daily. That's a lot of a strong antibiotic! Glad to hear things are progressing.

As for the weight gain with prednisone, it won't be easy to lose while you're still on it. Once you get to lower dosages (generally defined as <10 mg/day), it will come off -- slowly. Portion control allowed me to lose about 0.5 lbs a month. Once my wife started a new, healthy eating plan (that I also follow), the weight came off a bit more quickly. It still took me over a year to lose the 25 Pred pounds. The plan is pretty simple -- cut out processed foods. We shop the perimeter of the grocery store -- produce, meat, and dairy. We also try to avoid gmo foods and minimize grain intake. For me, a typical day's food intake is:
> Breakfast: black coffee, old-fashioned or steel cut oatmeal made with whole milk, sweetened with a few drops of stevia or a little honey, and some berries.
> Lunch: Greek yogurt with fruit, a banana, and a small sandwich on gluten free bread.
> Dinner: Tossed salad of dark greens, broccoli, tomatoes, peppers, cauliflower, onion, olives with a vinegar and oil dressing (watch out for added sugar in salad dressings); a baked sweet potato; and some protein (we probably overdo this as we both really enjoy red meat).
> Snacks: a handful of nuts (almonds or cashews) or a piece of fresh fruit.
I try to drink 3-4 glasses of water a day. I have an occasional beer or glass of wine. I gave up soda altogether except for a bottle of tonic water that helps with the hand cramps I have once in a great while. When we go out, we'll eat a little less healthy, but only do that once or twice a week.

I was in pretty good shape pre-wegs. On the way to remission, I resumed exercising very gradually. I typically walk 3 miles 4-5 days a week. I'm also going to resume swimming and light resistance weight training once or twice a week. The exercise makes me feel better and helps me sleep better.

Hope this is helpful.